The pain of Sudden Infant Death Syndrome
Did you know that ‘cot death’ is a phrase now considered outdated? Sadly, babies die unexpectedly, and in all manner of locations. I talked to two families torn apart by SIDS, both eager to explain the real meaning behind this cruel syndrome.
Earlier this year, the NICE consultation on safe sleep was published. It did little to explain Sudden Infant Death Syndrome adequately to many of the parents left behind by babies who had SIDS as the cause of death on their death certificates.
The Lullaby Trust, a charity providing specialist support for bereaved families, is committed to supporting research to understand why five babies a week die suddenly and unexpectedly in the UK, and to find out more about how to prevent these tragic deaths.
Jennie Henley, age 38, is mum to four beautiful children. Twins, Esther and William, age 4, that recently started infant school, 8 week-old Beatrice Hope, aka Rainbow baby. And, Matilda Mae, angel baby, who at nine months-old, went to sleep one day as usual, and never woke up.
Living with grief ever since, Jennie has carried a further pregnancy with fear not joy, and now, with her rainbow baby in her arms, finds it difficult to relax because of what happened to Matilda Mae.
She said, ‘I will never understand why she could not stay
and I will worry every day
that her sister will follow. We hope so much that Bea will grow old. I live in continual fear
of losing our eldest two as well.’
Jennie is in close contact with the Lullaby Trust, for whom she has helped by raising upwards of a staggering £30,000 in her daughter, Matilda Mae’s name. And although Jennie has received care and support with their Care of Next Infant (CONI) programme – a national health-visitor led service for bereaved parents run together with the NHS for families before and after the birth of their new baby – naturally, Jennie worries that her new daughter will suffer the same cruel fate as Matilda Mae.
The Lullaby Trust commented, ‘Although siblings of babies who have died of SIDS are at a slightly increased risk, it is very difficult to say whether this is due to genetic or environmental factors. A subsequent baby could be exposed to the same SIDS risk factors in day to day life, and therefore be at slightly higher risk.
‘As we don’t know what causes SIDS it could also be that a subsequent baby has a similar genetic vulnerability, alternatively the previous baby could have had an underlying infection and therefore a sibling is not at an increased risk at all. Research shows us there is an increased risk, but as yet we don’t know why this is.’
As a mother of an infant claimed by such a cruel death, Jennie is keen to point out what she does know about SIDS. ‘Not enough people are aware that it is not what is so commonly mistermed as ‘cot death’. It is not when a baby suffocates or overheats. It is not when a baby gets caught in a bumper or cord. What SIDS is, is when no cause of death can be ascertained.’
She adds, ‘It is a syndrome of exclusion, when every other possible reason has been discounted. It is when a healthy baby dies, suddenly, and with no apparent cause.
‘I followed all the safe sleep guidelines, and my beautiful healthy baby still died. Realising I may never know exactly why, and that nothing I could have done would have made a difference; that is what SIDS is.
Robert Weeks’ daughter Sophia was three months-old when she died of SIDS. He adds, ‘SIDS is when a medical professional and police inspector visit your house the same day that your baby dies, to inspect where the baby lived and where it was found, so that they can (quite rightly) rule out foul play.
‘SIDS is also trying to explain what happened to your child to those that ask, when you have no idea what happened. As far as you knew, they were in a safe place and all was normal. It is also trying to explain to the children remaining, that their sibling has died.’
For all of these incomprehensible clarifications as to what SIDS is, for Jennie and Robert and their families, gaining closure is not likely to be on the horizon. Understanding why SIDS happens to this day remains unknown.
What Robert and Jennie do understand is that they have to accept the anguish of not knowing how to prevent SIDS from happening again. Along with the shocking realisation that no one else at all, knows how to prevent it from happening again either.
Jennie blogs a beautiful tribute to her angel daughter Matilda Mae.
Robert blogs about angel daughter Sophia, and what SIDS is really about.
INSPIRATIONAL
Jennie is an inspiration to many, raising over £30,000 in Baby Tilda’s name for the Lullaby Trust through walks, balls, marathons, bake sales, sky dives and more. A Rainbow Walk and a Mile in Memory in Kent are being planned for 2015. If you would like to get involved email jennie@edspire.co.uk
What is Sudden Infant Death Syndrome?
Also known as SIDS, Sudden Infant Death Syndrome is the term used when deaths remain unexplained after the post mortem. Other terms such as SUDI (Sudden Unexpected Death in Infancy) or ‘unascertained’ may be used.
What are the stats?
270 babies and toddlers still die every year of SIDS in the UK. Since parents and carers have been following the risk reduction advice first promoted in the early 1990s, the number of infants dying has fallen significantly. •According to the Office of National Statistics, 2014
Can you prevent it?
Annie Simpson from the London based infantsleepconsultant.co.uk says, ‘You cannot ever prevent SIDS but there are steps to safe sleep that can reduce the risk.’
According to the Lullaby Trust, which promotes expert advice on safer baby sleep, and raises awareness on sudden infant death, these are:
* Always place your baby on their back to sleep
* Keep your baby smoke free during pregnancy and after birth
* Breastfeed your baby, if you can
* Use a firm, flat, waterproof mattress in good condition
* Never sleep on a sofa or in an armchair with your baby
* Don’t sleep in the same bed as your baby if you smoke, drink, take drugs or are extremely tired, or if your baby was born prematurely or was of low birth weight.
• Avoid letting your baby get too hot
• Don’t cover your baby’s face or head while sleeping or use loose bedding
Further help & advice?
Advice including factsheets and the latest research can be found by visiting lullabytrust.org.uk or emailing info@lullabytrust.org.uk
The Lullaby Trust bereavement support line is 0808 802 6868 or the information line is 0808 802 6869.
This feature first appeared in the Nov/Dec issue of Baby London Magazine. My thanks go to Jennie and Robert for sharing their brave words.
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